Topamax

[AletheiaRivers]

I've just been prescribed Topamax for a "Migraine Variant".

 

To be honest, I'm scared to death to take the drug but am at my wits end as nothing else that I've tried has helped.

 

Just wondering if anyone here takes Topamax or any other migraine prophylactic that has helped them with headache and vertigo.

 

Thanks in advance for any responses and for humoring this WAY off topic post.

[flowperson]

I've just been prescribed Topamax for a "Migraine Variant".

 

To be honest, I'm scared to death to take the drug but am at my wits end as nothing else that I've tried has helped.

 

Just wondering if anyone here takes Topamax or any other migraine prophylactic that has helped them with headache and vertigo.

 

Thanks in advance for any responses and for humoring this WAY off topic post. 

<{POST_SNAPBACK}>

[flowperson]

I've just been prescribed Topamax for a "Migraine Variant".

 

To be honest, I'm scared to death to take the drug but am at my wits end as nothing else that I've tried has helped.

 

Just wondering if anyone here takes Topamax or any other migraine prophylactic that has helped them with headache and vertigo.

 

Thanks in advance for any responses and for humoring this WAY off topic post. 

<{POST_SNAPBACK}>

<{POST_SNAPBACK}>

If you haven't tried a regimen of vitamins, minerals and herbs I would suggest that approach. There is a lot of information available on the web. I would suggest iherb.com as a good starting point (a yahoo store). My personal experience over the past 20 years would suggest a combination of St.John's wort and Kava Kava capsules as a long term regimen. But since this goes against the theories of western medicine (short term problem-short term quick fix, which is analogous with, fast food-fast death), you'll probably run into flak from your doctor(s). All I can say is that it is difficult to be progressive and optimistic when you feel like crap. 20 years of doing my thing with this method has improved my outlook tremendously and how well I feel on a day to day basis ......... flowperson.....S Nevada

Edited August 4, 2005 by flowperson

[AletheiaRivers]

Thanks flowperson,

 

I've actually "been in" natural foods, herbs, vitamins and alternative therapies for 12 years. I managed the supplement department in a local natural food store for 11 years and have been doing training packets for the last year to teach counselors what's what with herbs etc ...

 

I've tried everything and anything "natural" for this issue: St Johns, Kava, Feverfew, Butterbur, Willow, Chiropractic, Cranial Sacral, Magnesium, Riboflavin and the list goes on ...

 

Thanks again though

[des]

Well I looked this up on webmd, which I have found to be a pretty good source of info. it is an anti-seizure drug (several other ones have been found to prevent migraines). It doesn't look as bad as some fo them. I have been taking Tegretol for years and the most annoying problem is electolyte imbalance (pee a lot losing sodium). This has been more problematic since moving to the Southwest.

 

Here's a link:

http://my.webmd.com/drugs/mono-6019-TOPIRA...me=Topamax+Oral

 

Honestly doesn't sound too awful. I know someone on a different anti-seizure drug that had a liver problem. HAd to stop asap, and it will take some time for him to totally be ok.

But they do do blood tests periodically. Doesn't look like Topamax is related to anything like that. I think the worse thing is eye problems. I would increase visits to optometrist.

 

HTH,

 

--des

[AletheiaRivers]

Hey Des, thanks for the reply.

 

Actually I've done a LOT of research online about Topamax, probably more than I should have.

 

The #1 side effect is "paresthesias", which is caused by sodium and potassium loss. I can handle the numb feet, face and hands.

 

It also causes "acidosis", caused by the same bicarbonate loss. This can cause rickets and osteoporosis. Regular blood tests to check for acid/alkaline balance are recommended.

 

And again, the same bicarbonate loss combined with water loss causes kidney stones. It WILL cause them, but they can be fought off with enough water.

 

The #2 side effect is loss of appetite and having everything taste like crap. Apparently is makes everything taste metallic and bland. LOL. No wonder some doctors prescribe it for weight loss (stupidly, imo).

 

I've got my sample. I agree the side effects aren't like Depakote or Dilantin, but still, it IS a anti-seizure med.

 

My other option is Verapamil, a calcium channel blocker. I'm not too hip to it either.

 

PS - Oh yeah, and the "eye problems", ie "narrow angle glaucoma" comes on abrubtly (without any real warning) and so an opthamologist might not catch it before it has manifested. Apparently however, the glaucoma is reversible if the drug can be stopped quickly enough (hard to do when it has to be titrated down).

 

I'm sure I'll start it Sunday as planned, I was just hoping someone here might have some stories to share about Topamax, other meds, or their migraines.

Edited August 5, 2005 by AletheiaRivers

[des]

Yes, sometimes information can be less than helpful. :-)

I'm sure many people take the drug safely-- they just don't get in the PDR.

Most of the anti-seizure drugs have electrolyte problems. They aren't usually so severe as described. They are usually on the annoyance side, rather than the serious side (parathesias). For ex. I have got a sodium balance problem, and it mainly makes me pee a lot. I then know, there's a problem. I take a health food store powder called Electromix. I also like a health food store version of Gatorade which helps (no sucrose).

NOt everybody gets those problems either.

 

As to the tritration down, it isn't *that* long. But they just cannot stop these drugs that quickly. It may be easier if you are not taking them for seizures. (That's the big risk for folks with epilepsy.) So if, in the very unlikely event, that you got glaucoma, these drugs aren't THAT hard to get off.

 

Well I'd take an anti-seizure drug over a calcium channel blocker, but you know it's a known thing vs an unknown thing. (also a calcium channel blocker wouldn't do much for epilepsy

:-)).

 

Like anything else, they have to list every single side effect possible which looks very scary. Naturally not everyone gets them. The common thing just about everyone gets are thigns like constipation, dry eyes, that sort of thing. (NOt sure what they are for this drug), but mostly they are nuisance effects.

 

Right now I am on 2 prescription drugs and Prilosec OTC, which is the same as the prescription drug (only a tiny change)-- enough to let them keep the brand name status. GRRRR. I used to be on 5-6 prescription drugs at once. Never had any very serious side effects. (Many of the drugs have potentially serious side effects.)

 

If it works well, it will be a heck-o-lot better than migraines.

 

 

 

--des

[Cynthia]

Hey Aletheia - I know several people who have taken topamax. One or two have had to stop because of side effects, but it was personal tolerance, not serious medical conditions . Others have lost weight - truely with no effort. I agree that that is not an appropriate primary use of the drug!!! It seems that if you use this as an opportunity to get healthier and get rid of the migraines it could be a good thing. Good luck and God bless. Let us know how it goes.

[Realspiritik]

Hi Aletheia,

 

Hope you don’t mind a little input from a different perspective. I’m not a licenced physician. But in my work, I stick very closely to established scientific research. So I don’t make these observations rashly.

 

The human brain (or, more properly the whole central nervous system) is still terra incognita for most clinicians. It’s really troubling to have a major medical problem like migraines and not be able to find anybody who can tell you why you’re having them. At least if you understood the origin of the problem, you could make more tailored choices to counteract the underlying physiological imbalance. You’ve tried the logical things like supplements, etc., without effect. So what’s left besides anti-seizure drugs? Well, there’s one other thing you can try in addition to the Topomax. I think the two approaches would complement each other well. Of course, it’s up to you and your physician whether or not you stay on the Topomax, but if it gives you some relief without serious side effects, then maybe it’s worth it.

 

Migraines are caused when different parts of your brain give diametrically opposed messages to each other. One part of your brain is saying “push” while another part is saying “pull”. The part of your brain that’s supposed to put together the action plan (the cerebellum) can’t take the conflict. It sends out a message that it wants a clear choice one way or the other – and it uses pain to get your attention.

 

The body has ingenious ways to get us to stop and listen to ourselves, whether we want to listen or not. Most migraine sufferers find they can’t shake the pain without resting quietly in a darkened room. So what your cerebellum is communicating to you is that it wants you to spend more time resting quietly. It can’t keep up with the demands you’re making on yourself. The brain needs a lot of quiet rest time to function properly. It also needs to be “fed” certain kinds of quantifiable brainwaves – the kind you see on an EEG, like alpha waves, which I’m sure you know a lot about. If the brain doesn’t get the chance to be soaked in alpha waves on a regular basis and get a chance to “relax” through alpha brainwave synchrony, it reacts like your car engine when you forget to put oil in it. The parts don’t flow smoothly. They begin to seize up – and isn’t it funny how we call a random misfiring of synchronous electrical current in the brain a seizure. You might want to check into biofeedback training to help you quickly master the use of alpha waves.

 

Taking the time to feed your brain alpha energy is a hard thing to get used to if you’re a type A person who’s always thinking, planning, and on the go. But your body knows its limits.

 

Hope this helps.

 

Love Jen and Jesus

[FredP]

Hmm, yeah Alethia, you sound like a pretty Type A personality to me.

[flowperson]

"Taking the time to feed your brain alpha energy is a hard thing to get used to if you’re a type A person who’s always thinking, planning, and on the go. But your body knows its limits."

 

Too much planning automatically puts us in a box over time, and when we sense we are in a box, the natural parts of us (our organic bodies) always try to find methods of escape.

In the absence of any possible long-term escape, our organic self begins internal warfare. Our immune systems rebel and deteriorate. We feel pain. Remember that our most ancient heritage is nomadic within nature.

Society can take the person out of nature, but it cannot take nature out of the person. Or, as I sometimes relate my favorite proverb to some of my customers," People plan, God laughs."

[des]

I have great problems with taking a physical disorder like migraines or many others (many things have stress as additive or *partially* causal factors-- or are the results rather than cause, having migraines would certainly CAUSE stress). My problems with are two-fold:

1. It promotes a "blame the victim" standpoint that is eerily similar to Christian Science. If you had better happier thoughts you wouldn't have _____. REALLY? I think why you have the conditions you have are as much luck of the genetic dice. We know migraines, for instance, are highly heretable.

 

2. I have no problems with general acknowledgements to laugh, be happy, etc. but I have grave doubts as to just exactly (in nos. that you could use statistically) what these effects are.

 

3. After seeing hundreds of people claim God healed them, I can find really not that much proof. I sure buy the whole notion that God heals everyone that gets healed of anything (in that the body, built by God, has massive recuperative powers). But many of these people claiming healing of some kind are often unaware of spontaeneous cures, cyclical nature of illnesses, etc. etc.

 

While I'm sure our modern life has put more stress on us in someways we are infinitely healthier and longer lived than our nomatic brethren and sistren. :-)

 

OTOH, I'm not sure the current state of biofeedback research. I am pretty certain that with migraines they did not use alpha brain waves (which btw, don't always make one calmer, ime). They used warming the hands. Patients can learn to warm their hands, which causes blood flow to go into the hands vs the head. As I said, I don't know the current state of this research or whether any biofeedback research ever really went anywhere. I still see claims for it for ADHD, but most good students of research will tell you most of these studies are garbage. I think it is simplistic to think of migraines as pushing and pulling of diametrical parts of the brain, actually it sounds a bit new age. I think generally migraines are considered to be a vascular and not really a neurological disorder.

 

BTW, the interpretation that since migraine sufferers can't shake the pain without being in a dark room, that means _____. Well but most all migraine sufferers have extreme light sensitivity as part of the cluster of symptoms (sometimes the only one btw).

 

 

--des

Edited August 18, 2005 by des

[Realspiritik]

Wow. I don’t know what to say. I base my work on up-to-the minute research. I don’t think this site is the place to get into a nitty gritty debate about specific research papers, but I’d like to comment in a general way on the dualistic approach to the human body that’s so prevalent in our society today. Gajillions of individuals still think of the body and the mind as two different substances which are only vaguely related to each other in some ill-defined way. I honestly can’t comment on Christian Science teachings, because I know nothing about them. But I do know how powerfully my own emotions affect my physical body. I do know that for 20 years I suffered from ulcerative colitis, and I do know that taking the right medications, eating the right foods, and taking loads of supplements did nothing to make my colitis go into remission. It only healed permanently when I left the stressful marriage I was in and took more responsibility for my own emotional choices. At the time I was dealing with the extreme discomfort (both physical and emotional) of inflammatory bowel disease (IBD), part of me was aware that my body was reacting negatively to my emotions. My biggest problem was that, 15 or 20 years ago, I couldn’t figure out which were the problem emotions. I needed somebody with training and experience to help me. Part of me knew that if I found the right therapist, my colitis might improve. But you know what? I copped out on myself. I didn’t take that step. I made a whole bunch of excuses for why I couldn’t get counselling. That was my choice. I take full responsibility for that choice. As it turns out, of course, my half-thoughts were right – my emotions were the problem. When I took charge of understanding my emotional choices, guess what happened? My colitis slowly healed. Last month, I proudly donated blood for the first time since I was a young adult. They won’t let you donate blood when you have IBD, and then, after your IBD goes into remission, they make you wait a further 5 years just to be sure. I recently passed the five year mark.

 

So as for the “blame the victim” thing, I just don’t buy it. Sure we all get dealt some crummy genes. Sure we all have accidents that leave us with broken bones, missing digits, or worse. But research proves that genes can be turned on and off by a whole host of factors, some of them emotional. And those who have to deal with the physical fallout from a serious accident or illness can either feel sorry for themselves (i.e. make themselves into victims) or they can try to work around whatever disability they’re left with and try to make the best of it. I imagine most of the readers on this site have some personal experience with this.

 

I have great respect for the advances of western medicine. I think it’s awesome that we have so many medications (whether prescription or complementary) to help our bodies get back into the balanced state God intends. I would still be using my IBD medication if I needed it, but I don’t. I think it’s awesome what surgeons can do. I also think it’s obvious that no matter how much one tries to apply “will power” to a medical problem, will power can only go so far. The only part of the human experience anybody has full control over is their emotions (it takes a lot of effort, but it can be done). You can’t use will power to grow regrow severed spinal cord neurons. But you can use your will power to decide how you’re going to deal emotionally with the reality of being disabled.

 

I’m not being cavalier about other people’s suffering. I’ve been through the worst ordeal a parent can go through – watching their beloved son die of cancer. Do I believe he got cancer because he was thinking “bad thoughts”? Good grief – he was 2 ½ years old. Of course not. Do I think he got cancer because his father and I were thinking “bad thoughts”? Nope. Do I think God could have healed him? I thought so at the time, as did the compassionate church community we belonged to, and if prayer alone would have done the trick, I imagine he’d be getting ready to go to university this fall instead of being the dearest memory of my heart. Do I still, today, after all I’ve learned, think God could have healed him? Yep. So why didn’t God heal my gorgeous blue-eyed, blond-haired angel? Because it was time for him to go Home. That’s the best answer I can give you.

 

Sometimes life is a desert of pain, but what’re ya gonna do? Ya just gotta keep on truckin’.

 

Love Jen

[Realspiritik]

P.S.

 

I just realized I've made this thread too serious for the Cafe site, so if anybody wants to discuss it further, perhaps we could start a thread in Debate & Dialogue? Sorry about that.

 

Jen

[AletheiaRivers]

The cafe sight is for ALL off topic discussion, (serious or lighthearted), that doesn't deal directly with Christianity. Don't worry about being "too serious" in here. It's no problem imo.

 

I guess I should update you all. I haven't started the Topamax yet. I had a 72 hour migraine about a week ago, which made me seriously wish I had started it (although it probably wouldn't have helped, as it would have been too soon).

 

I actually don't get headaches. My migraines are "complicated". They last anywhere from an hour to 14 days. I get seriously horrible vertigo, visual aura (flashing lights), photosensitivity, phonosensitivity and an electrical humming, buzzing sensation (that comes in waves for 2-3 days) in my head that makes me wonder if I'm having seizures.

 

Anyhoo ...

 

I appreciate Des' response because, at first read, it did sound alot like a "Louis Hay" or "prosperity gospel" idea was being put forward. From your second reply Jen, I can assume that is NOT what you were proposing. Thanks for the clarification.

[Realspiritik]

Aletheia, your poor thing -- yikes! I'm thinking about you, and hoping you can find the right support team to help you recover from this.

 

And hey -- if you have a minute, could you fill me in on what "prosperity gospel" is? Apparently there are a lot of branches of theology (if you can call it that) that I still need to learn about.

 

God be with you.

 

Love Jen

[cunninglily]

The cafe sight is for ALL off topic discussion, (serious or lighthearted), that doesn't deal directly with Christianity. Don't worry about being "too serious" in here. It's no problem imo.

 

I guess I should update you all. I haven't started the Topamax yet. I had a 72 hour migraine about a week ago, which made me seriously wish I had started it (although it probably wouldn't have helped, as it would have been too soon).

 

I actually don't get headaches. My migraines are "complicated".  They last anywhere from an hour to 14 days. I get seriously horrible vertigo, visual aura (flashing lights), photosensitivity, phonosensitivity and an electrical humming, buzzing sensation (that comes in waves for 2-3 days) in my head that makes me wonder if I'm having seizures.

 

Anyhoo ...

 

I appreciate Des' response because, at first read, it did sound alot like a "Louis Hay" or "prosperity gospel" idea was being put forward. From your second reply Jen, I can assume that is NOT what you were proposing. Thanks for the clarification.

<{POST_SNAPBACK}>

[AletheiaRivers]

Lily,

 

I think the board ate your comments. Dang hungry board!

[AletheiaRivers]

Prosperity Gospel or Word of Faith - Wikipedia definition

 

The Word of Faith movement or word-faith theology developed in the latter half of the 20th century in mainly Pentecostal and Charismatic churches. Its beginnings trace back to an early twentieth century evangelical pastor, E.W. Kenyon (1867-1948), who preached that God would award financial and other gifts if the faithful would ask. Kenyon coined the phrase, "What I confess, I possess." Kenneth E. Hagin is often credited with being the father of the modern Word of Faith movement, using a four-part formula he claimed to have received from Jesus: "Say it; do it; receive it; tell it."

 

Proponents of the doctrine include Kenneth Copeland, Creflo Dollar, Benny Hinn, Joel Osteen, and Marilyn Hickey, among others. They teach that Christians must claim the grace God has promised them, whether in material goods, health, social position, or roles within the church.

 

Detractors, such as Ron J. Bigalke Jr., Norman Geisler, Hank Hanegraaff, Dave Hunt, and Roger Oakland, denounce word-faith theology as aberrant and contrary to the teachings of the Bible. Hanegraaff, among the others, claims that this teaching goes against God's sovereignty and his prerogative to grant or deny what the praying one asks for. Word of Faith theologists counter that they believe the Bible is God's will and they are having faith in His Word.

 

Basically the idea is, if you BELIEVE enough, have FAITH enough, PRAY enough, God will give you what you ask for: health, money, power, etc ... Which implies (and I've heard it said straight out on beliefnet by supporters) that if you are sick, or poor or are unknown then you don't believe enough, pray enough or have enough faith in God.

 

I find it a sad, sad, sad theology, both in Christianity and in New Age.

[des]

Jen, I also liked your clarification. Btw, as for IBD, I'm pretty convinced there is a huge dietary component. OTOH, my only experience with it is with cats. I have not one but TWO IBD cats. I spent $$$$ trying to dx what was wrong with them, and $$$ trying to treat them including multiple courses of antibiotics (meaning pilling cats-- what fun!). Anyway, I started reading up and apparently cats (and dogs though to a lesser degree) are carnivores and not really built for eating grains. So there are all these foods containing over 50% grains and they right thru the cat-- leading to failure to thrive and runs and so on. I have one cat on a natural cat food (store bought) and another on raw food. He went from nearly dead and now he is very healthy and thriving and gained back something like 8 lbs (he's a big boy).

 

 

So that might be a round about way of saying that, yes, I believe diseases have multiple causation. I have epilepsy which has been under control for something like 10 years. I'm sure I wouldn't have any kind of seizure control had it not been for Tegretol. OTOH, I took Karate. (Yes, I was younger, all them kicks and so forth are very "hard"). And a really key thing I learned was breath control and I actually learned how to prevent seizures as they were starting to happen. Also it was good as it was a very relaxing thing. I used to do katas, which are prearranging forms. And I did them and didn't think about anything else. I would suggest martial arts to anyone with a seizure disorder. BUt I would not tell them to go off medication.

 

The things that contribute to health and wellness are little appreciated by allopathic physicians who tend to deal in disease.

 

What I meant by "blaming the victim" is that many, though not all highly alternative treatments-- if they don't work it is a lot of times blamed on the victim. They didn't do it right; they didn't do it enough; etc. etc. I'm not saying that with everything. But I do use alternative medicine, for ex. taking vitamins. I have also had acupuncture.

 

--des

[Realspiritik]

The Word of Faith movement or word-faith theology developed in the latter half of the 20th century in mainly Pentecostal and Charismatic churches. Its beginnings trace back to an early twentieth century evangelical pastor, E.W. Kenyon (1867-1948), who preached that God would award financial and other gifts if the faithful would ask. Kenyon coined the phrase, "What I confess, I possess." Kenneth E. Hagin is often credited with being the father of the modern Word of Faith movement, using a four-part formula he claimed to have received from Jesus: "Say it; do it; receive it; tell it."

 

Yeah, right, so I'll just be placing my order for that sleek black Beemer. Now why didn't I think of that before?

[AletheiaRivers]

Hehehehehehe

 

Order me up a red one will ya? Actually, my tastes are more low-key - how about a Jetta or a Passat?

[des]

Sounds almost like namio haringae ko (oh gosh I have no idea at all how to spell this, but it is phonetic if you want to try figuring it out-of course I'm not real sure exactly how it was pronounced either). Anyway, it is this "Buddhist subgroup (I am resisting the word "cult" as I don't care for it--- except for extreme cases like snake handling), but I'm sure no actual Buddhist would say it had anything to do with Buddhism. Anyway, I knew someone in this, very nice person. Anyway she said that you meditate for *anything* (of course that sort of goes against the whole thing of attachments, but as I said it isn't too Buddhist). She claimed that (it was in the early 70s) that you could actually meditate for drugs, and that after a while your desires would change into purer ones but that you would actually get the drugs (which sounds bizarre).

 

Also reminds me of the song by Janis Joplin. "Oh Lord won't you buy me a Mercedes Benz, my friends all drive Porches, I must make amends. Worked hard all my lifetime, no help from my friends. Oh Lord won't you buy me a Mercedes Benz." :-)

 

 

--des

[Cynthia]

Aletheia - Thought you might be interested... I've talked to 3 different people recently who said that topamax has dramatically reduced their migraines. Hope you're doing well!

[AletheiaRivers]

Thanks Cynthia. I'm still here and doing okey dokey.